This review contains mild spoilers.
The Islands at the End of the World by Austin Aslan follows a teenage girl, Leilani, and her father as they try to make their way home from the island of Maui to the island of Hawaii in the midst of a global apocalypse. A mysterious atmospheric disturbance has shut down most technology and sets the world back a hundred years. A road trip on steroids, this book features car chases, secret military bases, and a narrator whose magical seizures give her the ability to speak to aliens.
Yes, you read that right. Going into too much detail would spoil the story, but it is true that the “natural … weirdness” of having epilepsy means that Leilani can connect spiritually with aliens. Aslan’s portrayal of epilepsy up to this point had its ups and downs, but this reveal was too much for me. I burst out into shocked laughter when I first read it and it look me several minutes to collect my thoughts before I was able to continue with the book. This decision to make Leilani’s seizures into a supernatural experience was troubling, to say the least. Medical conditions involving the brain are widely misunderstood, and epilepsy is an easy target for mockery and ill treatment in media and popular culture. The decision to make it literally otherworldly undermines the very real nature of epilepsy and only serves to help keep it mystical and inconsequential in the eyes of those who have not experienced it. This also plays into the magically disabled person trope, which turns the disability into a plot device, harming the people who truly experience the disability and actively misinforming those readers who do not.
But my true ire was not raised until the two separate occasions when Leilani consumes aspartame in order to force herself to have a seizure. The first time it is part of an escape attempt, and the second time it is so she can speak to the aliens. The moment it became clear that Leilani was going to use her seizures in this way I was flabbergasted. What bothered me was the way that this concept felt so easy for a person without epilepsy to include and not realize the hurt it would cause readers who actually live with the condition.
The problem wasn’t that a girl with seizures was saving the world; the problem was that having a premeditated seizure was the only way that she could do it. It was exploitative on a level that frightened me. Seizures are not casual. And until this, I thought Aslan had a grasp of that. Every time you have a seizure, you risk brain damage and physical injury and you unwittingly place your life in the hands of the people around you. It is vulnerability in the extreme. Overcoming the fear and anxiety that accompanies that is not an easy task. Leilani struggles with it throughout the book, which made Aslan’s utilizing it in a martyr-like capacity feel even more insensitive and out of touch.
I may have been able to grudgingly accept this alien communication thing had it been presented in a different way and had it not required an actual seizure. Maybe. I certainly could have accepted if Leilani’s epilepsy helped her save the world because of the unique perspective that having a disability and being marginalized afforded her. But it was the exploiting of the seizure act itself that I was unable to stomach. It showed Aslan’s disconnect with the condition he was portraying and reminded me too much of the harmful tropes that follow people with epilepsy on a regular basis.
I was also concerned with the decision to make Leilani a surfer. A major part of my experience having epilepsy and living with this particular disability has been accepting my limitations and finding my strengths. When I was younger, I used to dive. I would jump off of boards and do tricks and flips before landing in the water. I wasn’t on my way to the Olympics or anything, but it was my thing and I was pretty good at it. Then I began having seizures and had to quit because epilepsy and regularly leaping into bodies of water just don’t mix. It was a responsible decision, but it was a difficult one.
Leilani and her parents make some different choices. When she began having regular seizures, her doctor and the insurance company made her quit gymnastics. So after finding out her seizures were too extreme for a controlled, supervised, indoor sport, Leilani turned to surfing. Surfing. The irresponsibility that allowed this was staggering. A sport that takes place in the open water, where the athlete remains solitary and seeks out waves while attached to a heavy board. A life jacket doesn’t have the power to protect you from the dangers of a seizure in such a situation. Leilani accepts that she can no longer do gymnastics, but she does not accept that her limitations go beyond that. That there are things that she simply cannot do for her own safety and the safety of those around her; the people who may be forced to maneuver her out of the water and perform first aid that they aren’t qualified for. Later on in the book, her father admits that letting her surf was a bad idea but they chose to allow it anyway, “You’re an epileptic. Your mom and I breathe into paper bags whenever you surf. Don’t you realize that? I never should have taught you how to surf.” Having epilepsy means that there are some things that you can’t do, but there are so many more that you can. And I believe that Aslan could have shown Leilani finding her strength in a passion that was not potentially detrimental to her health and safety.
The plot of the novel begins when she and her dad travel to Maui to participate in an experimental drug trial. It wasn’t mentioned whether Leilani had tried any other alternate treatments before joining the experiment and risking being the one put on the placebo. These alternates include the ketogenic diet, which is never acknowledged, or medical marijuana, which is proven to be a viable treatment option but Leilani and her father mock. The drug trial thusly seemed like a drastic decision and made me continue to question the responsibility of her parents, doctors, and even medical insurers. However, I was pleased to see her time in the hospital representing an accurate portrayal of the endless frustration that is having a chronic disability in the American healthcare system. The waiting, the tests, the being surprised when no one thought to inform you of things that you certainly should know about your own health were all there. And I was comfortable, for the most part, with the physical description of Leilani’s seizures. The exception to that being the times she communicated with aliens because, “she’s epileptic. Some … electrical thing.”
Since The Islands at the End of the World takes place literally at the end of the world, Leilani must face the realities of her condition in a situation where no more medication or health care is forthcoming. Disability at the end of the world is a subject rarely explored in literature. And so there is one moment that caught my interest and really made me think more than any other part of the book. Leilani and her father are discussing the way that people are reacting to the loss of the technological advancements upon which we have come to rely and her dad says, “A hundred years ago this thing’s arrival would have resulted in a global hiccup. We have become too reliant on an unsustainable resource.” This certainly resonates with discussions of environmentalism and energy efficiency, but I was caught by the inherently privileged nature of that statement coming from a man whose child’s life and well being are tied to the medical care that is only possible due to modern technology.
It got me thinking about the nature of modern versus historical epilepsy experiences and what it means to be post-apocalyptically disabled. I would have loved to see these themes explored in greater depth, especially in the scenes where Leilani counts her remaining pills and considers the pros and cons of rationing them as her supplies dwindle. Going further with this idea would have made provided this book, which is great as an action-adventure, with a richer literary quality. Exploring the way people with disabilities would find ourselves at advantages or disadvantages in an apocalyptic world opens up lines of discussion about the limitations of disability and the strengths of adaptability, specialized skill, and a worldview lacked by most able-bodied people. Hopefully Aslan can explore this more in the promised sequel. With the continued popularity of apocalyptic and dystopian novels, the lack of disability representation in those worlds needs to be addressed and Aslan has here the perfect opportunity to begin that conversation.
The Islands at the End of the World excelled on many levels: the plot was well paced and the main characters were relatable and sympathetic. The action was engaging and the way people reacted to the apocalypse was scary and extreme but not implausible. There was accuracy in the basic aspects of having epilepsy such as wearing medical bracelets and waiting to be able to drive. It grasped the physical and public nature of epilepsy that is so terrifying when Leilani has flashbacks to once having a seizure in school, and the EKG was described with precision. But these could not, for me, outweigh the things that I found disrespectful and irresponsible in this portrayal. It touches on many other issues worth discussing, such as race, religion, and class warfare, but from a purely disability perspective, it fell short of its mark.
love the book i was excited about it.
Yes Thank you Elise Phalen for saying it all way better than I ever could, I’ll say I do love the main part of the story line with both books; with kinda creative depiction of aliens, and the Pearl as a new energy source, and what we’d do if our world changed in any big way with people needing to resort to the old ways to live off the land and improvising how to survive without technology which we’re all too dependent on, but the sad but probably the parts about people just losing their minds being awful phycho mean to others doing horrible things because of the end of the world type situation which scares me that I’m sure people would become that way its not what I enjoyed, and the biggest problem is epilepsy being portrayed this way to be used like a good gift, when it is so not something anyone can just live with nor would want to, me having a child only 5years old suffering seizures all day and all night for many years and tons of meds and treatments still not working that part hit me hard, I was thrown off about the same things you talk of here regarding epilepsy, she must decide to keep having detrimental damaging seizures in order to keep communication with aliens, I mean if the connection is keeping her seizure damage low or obsolete while the aliens are still there then cool ok I maybe accepting of it, maybe, and the surfing being ok to her parents (pre apocalypse) but not gymnastics, ugh, and the dad putting his hand in her mouth and being bit while trying to stop her from swallowing her tongue ugh sorry Austin and other readers but no that is not safe to put anything in someone’s mouth during a seizure, for the person’s safety aka breaking her teeth or for any persons fingers and you can’t swallow the tongue, if food is in the mouth turn them on their side don’t try to get it out…. I enjoyed your article on the book thank you! keep up the amazing writing
Let’s talk about how she never has her period either??? But thanks for the review, I loved hearing your critique 🙂